BCG For Bladder Cancer: Anyone got experience to share?

Posted by Parus @parus, Aug 6, 2019

Has anyone undergone this treatment?? Trying to find out what others have experienced with this treatment. Seems what I have read the outcome doesn’t sound encouraging. I am just not wanting/ready to start having body parts removed. It is disconcerting enough when they start relocating.

I'm so sorry to hear that your support person did a guilt-trip, @parus. What a shame. It sounds as if the staff person who scheduled you on her day off is certainly responsible for the mishap. I'm glad that your favorite little guy had a visit with you. What did you do together yesterday to make him smile?

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@parus

@hopeful33250 I have no idea. I have only seen the nurse since the discovery. Feel like I am left floundering. She had to come in last week and I was her only patient which placed me on a guilt trip. The one person that was being supportive did a guilt trip!!! I ask her about signs of infection and left wondering why she even came to work that day. See what tomorrow brings. Maybe she will be having a better day. She is really not allowed to answer questions. Just going through the paces. I had my favorite little guy yesterday. He is the reason I keep trying for now. I appreciate your kind support.
Spinal issues have me limited for now when it comes to distractions which work the best for me.

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I know having your little guy is true pleasure for you @parus I've been thinking of you and keeping you in prayer.

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@hopeful33250 We played with the paper mache scenes I have made for his reptiles, etc. Yesterday he incorporated the military to help with the invasion!! I so enjoy his imagination and company. Gives me incentive to keep trudging onward.
@sandytoes14 You are spot on with my pleasure in my little guy. He is so accepting of my limitations. Heartwarming.

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@parus

@hopeful33250 We played with the paper mache scenes I have made for his reptiles, etc. Yesterday he incorporated the military to help with the invasion!! I so enjoy his imagination and company. Gives me incentive to keep trudging onward.
@sandytoes14 You are spot on with my pleasure in my little guy. He is so accepting of my limitations. Heartwarming.

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@parus He sounds like a real joy! So glad you have him

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@parus

Reading input from others has been helpful. Final BCG instillation tomorrow morning. I appreciate what others have shared. Pretty much self involved and focusing on keeping things in order for now as I wait to see what the doctor says.

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@parus, I will be thinking of you tonight and tomorrow. Please remember that you deserve to be cared for with integrity and compassion by health care providers. They are the providers of care for your health. You should not be left to feel guilty. They have a job to do for and with you. If at any time you feel unsure or uncomfortable with what is happening, ask questions. Tell them how you feel. Being vulnerable is okay. I'll be watching for your posts closely tomorrow. Reach out if you need a virtual shoulder or extra support.

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Anyone willing to share their experience with BCG? Interested (for my husband) in the side effects. He is presently undergoing treatments (bad experience with it in 2014) for high grade bladder cancer. Hoping he can complete all 6 treatments as side effects are cumulative. Thanks from a worried wife.

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@sue225

Anyone willing to share their experience with BCG? Interested (for my husband) in the side effects. He is presently undergoing treatments (bad experience with it in 2014) for high grade bladder cancer. Hoping he can complete all 6 treatments as side effects are cumulative. Thanks from a worried wife.

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Hi @sue225, i can imagine that you're worried about the cumulative effects of Bacillus Calmette-Guerin or BCG treatment for bladder cancer and that you want to prepare yourself for what to expect for your husband.

You'll notice that I moved your question to this existing discussion with @parus and am also tagging other members who have experience with BCG to share their tips and stories, like @texascitylady @judith4 @plugger @tclingan25 and @sepdvm

Sue, did your husband have treatment for bladder cancer in 2014? When does he start BCG treatment?

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@colleenyoung

Hi @sue225, i can imagine that you're worried about the cumulative effects of Bacillus Calmette-Guerin or BCG treatment for bladder cancer and that you want to prepare yourself for what to expect for your husband.

You'll notice that I moved your question to this existing discussion with @parus and am also tagging other members who have experience with BCG to share their tips and stories, like @texascitylady @judith4 @plugger @tclingan25 and @sepdvm

Sue, did your husband have treatment for bladder cancer in 2014? When does he start BCG treatment?

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My husband has had bladder cancer for fourteen years and has had 8 TURBS. Along the way, he had one successful treatment with BCG, a treatment in 2014 which he did not complete due to intolerable side effects and a treatment with mitomycin and more recently a treatment with gemcitabine which he also could not tolerate.
He is now giving BCG another try after 2 TURBS in 2020. Two treatments are over. The 2nd treatment caused some discomfort which resolved after a day or two. (Irritable bladder symptoms, minimal bleeding on the day of). He really does not want to deal with bladder removal and at the same time is anxious about cumulative side effects and what treatment #3 will be like.
CAT scan coming up this month as well. Everything backlogged here in Canada. The CAT scan really should have been done prior to starting BCG.
Thanks so much Colleen.

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@sue225

My husband has had bladder cancer for fourteen years and has had 8 TURBS. Along the way, he had one successful treatment with BCG, a treatment in 2014 which he did not complete due to intolerable side effects and a treatment with mitomycin and more recently a treatment with gemcitabine which he also could not tolerate.
He is now giving BCG another try after 2 TURBS in 2020. Two treatments are over. The 2nd treatment caused some discomfort which resolved after a day or two. (Irritable bladder symptoms, minimal bleeding on the day of). He really does not want to deal with bladder removal and at the same time is anxious about cumulative side effects and what treatment #3 will be like.
CAT scan coming up this month as well. Everything backlogged here in Canada. The CAT scan really should have been done prior to starting BCG.
Thanks so much Colleen.

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Hi @sue225. Don't know whether I can be helpful to your husband, but I wanted you to know that I'll do whatever I can if you think so. I had bladder cancer surgery (TURB twice) in 2009. About a dozen papillary tumors were snipped off the epithelium (lining) of my bladder, followed by six BCG treatments to kill off any remaining tumor seeds. None have turned up in 12 years of cystoscopies examining my bladder lining periodically since the BCG treatments.

My father was another matter. He had prostate BPH that was belatedly treated — too late actually — because the surgery wrecked his urethra, making it impossible to urinate. The solution was to leave the bladder in place and connect it to an external pouch with a catheter through a "stoma" in his lower abdomen. He lived and thrived with that for a dozen years before he passed in 2007 at the age of 95. He never said he regretted the catheter, although the stoma became inflamed just before he died, and doctors said the infection may have been a factor.

I'll be glad to further explain our experiences if you have any questions. For clinical information that I valued, check https://www.medicinenet.com/bladder_cancer/article.htm. Martin

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@predictable

Hi @sue225. Don't know whether I can be helpful to your husband, but I wanted you to know that I'll do whatever I can if you think so. I had bladder cancer surgery (TURB twice) in 2009. About a dozen papillary tumors were snipped off the epithelium (lining) of my bladder, followed by six BCG treatments to kill off any remaining tumor seeds. None have turned up in 12 years of cystoscopies examining my bladder lining periodically since the BCG treatments.

My father was another matter. He had prostate BPH that was belatedly treated — too late actually — because the surgery wrecked his urethra, making it impossible to urinate. The solution was to leave the bladder in place and connect it to an external pouch with a catheter through a "stoma" in his lower abdomen. He lived and thrived with that for a dozen years before he passed in 2007 at the age of 95. He never said he regretted the catheter, although the stoma became inflamed just before he died, and doctors said the infection may have been a factor.

I'll be glad to further explain our experiences if you have any questions. For clinical information that I valued, check https://www.medicinenet.com/bladder_cancer/article.htm. Martin

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Thanks so much for your reply Martin. You have had good luck: amazing to be free and clear after 12 years! Also thankyou for the info about your father.
We will also check out the link to the medical website. Very kind of you. Wishing you continued good health.

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@sue225 I was diagnosed with bladder cancer in July of 2019. It was an aggressive type. Since it not gone through the wall of my bladder I opted to go with the BCG after the tumor was removed and so far so good. I am female and 69.

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@parus

@sue225 I was diagnosed with bladder cancer in July of 2019. It was an aggressive type. Since it not gone through the wall of my bladder I opted to go with the BCG after the tumor was removed and so far so good. I am female and 69.

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That's so good to hear. My husband (79),also has ,up until now,( after 14 years of dealing with this), non-invasive bladder cancer (high grade cells) He will be having BCG treatment no.3 this week and I hope it will be okay for him. CAT-scan next week, always a worry waiting for results .
Stay well and thank you for sharing.

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